Reddit Asks What It’s Like Living with HIV

For over a year, SFGN’s been telling its readers what it’s like living with HIV through former porn star Ryan Dixon’s weekly diary - but of course his isn’t the only story.

On Monday, Sept. 23, Reddit user Niko_Liez asked the online social community to talk about their daily experience with HIV. On Reddit forums, users can "upvote" comments, thereby elevating the comment’s position on the page (comments can also be downvoted, resulting in an opposite effect). Here are some of the top answers on the forum:

From user NurseChelsea:

My mom wanted me to tell her story. She was a Phlebotomist for 30 years, she worked the night shift for a hospital that had contracts with nursing facilities. She had a route and every night would go to the facilities to draw their patients labs. She also would be on call for STAT lab draws. Eight years ago she was called to a STAT draw at a nursing home. Something happened with the vacutainer which is the plastic piece the tubes go into. Blood started squirting out of the patient and into my moms mouth and eyes. After she cleaned herself up and was walking out of the facility the nurse started running after her. That’s when she was told the patient had HIV and Hep C. When she got back to the hospital they told her she had a very slim chance she would contract anything. Two months later she was diagnosed with Hep C, 6 months after that HIV. She lives a relatively normal life except that she can’t work and is on disability. She had chronic pain from multiple back surgeries before but with the HIV her body is too weak to have a job. Her levels are undetectable thanks to the cocktail of drugs. She has her good days and her bad. But recently found out the HIV was beginning to affect her brain and now has areas where damage has been made which affects her memory. HIV is no longer a death sentence but will take years from her life.

User never_ever_right:

It’s fine! Just sort of...background noise. I don’t have side effects (I used to. Crixivan nearly killed me.) It’s a couple of trips to the doctor a year and that’s pretty much it.

User tvmediaguy:

I’m positive. Been so for a decade. At first, the meds were horrible. The number 1 side effect is unbelievably real and vivid nightmares. Not dreams... But nightmares. It was tough getting past those the first few weeks... But they eventually faded away. Next major side effect is loss of short term memory. I just kind of laugh about that part now. But, by far... The most difficult part of being positive is having to tell other people. I don’t mean family or friends... That part wasn’t hard for me. I’m speaking of casual encounters at bars and such. Gone are the days of casually hooking up with some hot dude at the bar. Now... There has to be a "discussion" which always kills the deal. Makes it very hard to date... And I don’t do it very much because frankly I feel like damaged goods. I broke the rules. Now I have to pay for it. The drugs aren’t bad... But having to explain to people my status... Is. Thats my experience.

EDIT - I’d like to thank everyone for their kind words! This is why I love Reddit! I try and pass good thoughts along to others myself... and you guys just threw me back a lot of love in return! As I replied to another user earlier, I’m very fortunate in other ways. I work at my dream job. I make pretty good money. I do pretty well in the looks department. I’ve got a sense of humor. I’ve got good friends and a loving family. Other than those couple of undetectable microbes hiding out inside of me somewhere... life is a blessing! If my biggest concern in this life is the toughness of the gay dating scene, I’ll consider myself lucky.

Again, thanks for letting me share, and thanks for your kind words!

User throw_awAIDS:

I’m a positive gay dude. I got it in 2009, when I was 23. I had been seeing a guy for a bit and we stopped using condoms. I got another, curable, STI (gonorrhea) shortly after, which was a problem, as I understood our relationship to be a monogamous one. It became clear that I didn’t actually have a good idea of the guy’s sexual activities prior to our relationship (he had claimed not to have had sex for a year before meeting me).

We stopped seeing each other, and a month or two later - after being very intensely sick - I was diagnosed with HIV. I arranged to have the guy I’d been dating informed through a third party service offered by my local public health department, so I’ve never spoken to him about it. I’m quite confident that I got it from him, as I hadn’t knowingly had unprotected sex with anyone else, and he confessed to having given me the gonorrhea before we stopped seeing each other. I have no idea if he was previously positive and unaware of it or lying, or if we got it simultaneously through his outside partner. I’ve never been all that curious - it won’t change much now.

I’ve never had trouble or side effects from my medication combo. Some meds which contain an ingredient called sustiva can have psychological effects and give you the vivid dreams a few people are mentioning, but I’m not on a combo which contains it. My viral load - the measurement of how well the virus is suppressed - has been very low since almost immediately after I started on meds. I am consistently told by my doctor that I can expect to lead a full life.

My life has changed for the better pretty much entirely. Being aware of my own mortality has radically changed the way I approach the world, how seriously I pursue my own goals, and how much I sweat the small stuff. My friends and the family members I told were nothing but supportive, and I started volunteering for an HIV/AIDS Service Organization within a few months of my diagnosis, and ended up meeting my best buddy through that, and a whole new group of very close friends as well. I live in a city with a huge gay community and lots of services for HIV+ guys, so there’s lot of other guys in my situation around, and I’ve never had trouble on the dating scene (to be fair, I’m also young and reasonably attractive). I’m about to complete a year with my current, awesome boyfriend, who is also positive, at the end of the month.

A letter that was apparently written by a grandfather, who condemned his daughter’s decision to kick her son out of the house because he is gay, has gone viral after it was sent to the LGBT organization website, FCKH8.com.